Autism

Mark Williams Excerpts

Tuesday 20th November 2012 Commons Chamber

[Mr Buckland]

I can assure you, Mr Speaker, that I am watching the clock anxiously, and I will now make progress. I am grateful to hon. Members for their interventions.

The hon. Member for Edinburgh North and Leith (Mark Lazarowicz) is right about the problem he illustrated: diagnosis is one thing but provision for older people with autism is another. Many older people to whom I speak tell me that, having had the diagnosis, they turn around and say, “Well, what now?” Very little happens after a diagnosis. Other speakers will deal with the point about assessment for benefits, but the message has to go out loud and clear that more training must be given to those responsible for conducting benefit assessments, so that what I call invisible conditions, such as autism, are fully understood by those conducting the assessments. I am sure that he, like me, will have had cases where that invisible condition was not recognised.

I am grateful that the Under-Secretary of State for Education, my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), who has responsibility for the draft Children and Families Bill, is in his place. I want to highlight a report prepared last year by the all-party group on autism, which I have the honour of chairing. I know that he has been listening carefully to the points and recommendations made in the report, and I welcome his approach in listening to the points made and already making changes to some of the provisions in the Bill—for example, the inclusion of apprenticeships as part of the future education, health and social care plans. I approach my remarks today in that spirit of engagement and listening.

I mentioned the all-party group’s report. Our inquiry included an online survey in which nearly 1,000 respondents took part. It is, I believe, an authoritative and useful source of information when it comes to the development of policy. Among other things, we recommended that local authorities establish local training needs for special needs and identify where specialist autism knowledge is available to local schools. The funding for specialist training programmes for teachers has to be an important part of that, and we look to the Government for their continued support.

We were concerned about the exclusion of children and young people with autism. They often result, sadly, in lives that turn into criminal justice issues, huge wasted opportunities and expensive mistakes that cost our country dear. We are concerned that schools with a high number of exclusions, permanent or fixed-term, should not be graded as outstanding or good in terms of behaviour, because we regard exclusions as a badge of failure. I say that with respect to all the professionals involved. I understand that it is often difficult to manage young people with autism and other conditions, but exclusions are not the way to deal with the problem. All they do is push the problem on to another agency. It is the equivalent of kicking the can down the road. That is a phrase we often here in this place, but it is what is happening to young people with these conditions far too often.

The all-party group also emphasised that the new system should ensure that all children with autism, whether they have a statement or not, have access to the necessary support, and that there be a lead teacher for autism in every school. We must not forget that children currently in receipt of help under the school action or school action plus schemes might not have needs that are acute enough to merit a statement or an education, health and social care plan, but their needs will remain none the less. I would be interested to hear the Minister’s observations about children in that category.

[Mr Mark Williams (Ceredigion) (LD)]

Will the hon. Gentleman give way?

[Mr Buckland]

I am afraid I need to press on.

There is also a need for joint commissioning of services, which is something that other contributors have touched on. In Swindon, which I represent, joint commissioning is already happening—we are seeing joined-up thinking, working and action—but in many places there remains a dislocation between health and education. Putting it bluntly, without the proper involvement of local health agencies, these reforms just will not work. The role of health and wellbeing boards, which were set up under recent health legislation, will be pivotal in ensuring proper joint working. I therefore urge my hon. Friend to do all he can as an Education Minister to ensure that other arms of government are doing all they can to ensure that education, health and social care plans knit together and provide a continuum of care.

I wanted to talk about accountability; very briefly, I will say this. Unless parents and carers feel that there are proper lines of accountability in decisions about their children, the system will not get the confidence it needs. Therefore, a proper and effective complaints system, encompassing all state-funded schools, must be put in place. I accept that school governors and Ofsted will have a role to play in the process, but personal action plans—agreements that will provide objective measurements of progress for parents to measure their schools against—are essential. This is not about bureaucracy for the sake of it; it is simply about ensuring that we can harness the earnest energy of parents to ensure the system works as best it can.

I welcome the proposals for local offers on SEN. I accept that local agencies will need to develop their own services, but I caution the Government in this respect. A national framework within which local offers can be developed will be necessary. The analogy I draw is between the system we have in health—where guidelines from the National Institute for Health and Clinical Excellence provide a framework within which local commissioners can develop services—and a system that I believe could work well in education. Such a system would ensure that parents and carers knew there was a basic standard to which the local offer would be made.

We have already touched on the problems and challenges facing young adults with autism going into the world of work. We have heard some depressing statistics in Wales. In England, one in four children with autism obtains some form of education or training after leaving school. That means that three out of every four do not have those opportunities. Some 25% of graduates with autism are unemployed, which is the highest proportion among any disability group. Fewer than one in seven adults with autism are in full-time employment, which is why I am encouraged that the Government are to extend the regime of education, health and social care plans right up to the age of 25. That is vital and acknowledges the fact that many young people with autism develop very much at their own pace—in a way that does not conform to the primary, secondary and tertiary stages of education—and it does so in a way that will allow them to develop and mature into adulthood. However, we do not want to move the cliff edge from 19 to 25. We have to ensure that the transition into adulthood after 25—after the end of the plans—is smooth and planned, and inspires confidence not only among those young adults, but among their families and carers.

The age in which people with these conditions are categorised as needing to be dealt with in a little box in the corner has ended, but we are now in a transitional phase. We have not yet created the systems that will allow the integration of such people into the mainstream of our national, social, economic and political life. I very much hope that today’s debate will, in some small way, be yet another milestone along that important road, so that in the years ahead, we as parliamentarians can say that we did all that we could to ensure that a minority with so much to offer was allowed to play its part at the heart of our life.

--- Later in debate ---

[Mr Mark Williams (Ceredigion) (LD)]

It is a privilege to speak in this debate, and I congratulate the hon. Member for South Swindon (Mr Buckland) on persuading the Backbench Business Committee to allow it. Like the hon. Member for Strangford (Jim Shannon), I praise the hon. Members for South Swindon and for Stalybridge and Hyde (Jonathan Reynolds) for their personal insights. Such insights are critical to the debate and warmly accepted by Members on all sides of the House.

Following the hon. Member for Strangford, I want to bring a Welsh perspective to the debate. In one sense, the hon. Gentleman has usurped me. I was going to say that Wales is leading the way through the development of its autism strategy, but sadly it seems that Northern Ireland is doing that. I hesitate to say that, however, because this matter is too important for one-upmanship. Nevertheless, I agree with the tone of his remarks because there are useful pointers and experiences from Northern Ireland, Wales and, no doubt, from our friends in Scotland as well to share with the Minister.

[Jim Shannon]

As I said in my introduction, the Northern Ireland Assembly has a close relationship with the elected Assembly in Wales. There is a real partnership together and a way forward.

[Mr Williams]

The hon. Gentleman is right and I suspect that our mutual friends in Autism Cymru, which is based my constituency, and Autism Northern Ireland have given us a similar brief about the collaboration between those two groups. Sometimes devolution can be helpful to our colleagues in England if it involves sharing good practice. We do not always get it right, but in this instance we have good examples to share with the Minister today and, in that spirit, I will explain some of those experiences. Like the hon. Member for Strangford, I can speak for my friends in Autism Cymru who would be more than happy to share some of their experiences with the Minister.

The Celtic nations partnership, which is made up of colleagues from Scotland, Wales and Northern Ireland who work together on these matters, has said:

“Developing national autism strategies supported by ring-fenced Government funding for autism is proving vital to improve the lives of people with ASD, and their families.”

Wales has had an all-age strategy for autism for four years. Since it started in 2008 some £12 million has been committed by the Welsh Assembly Government to the implementation of that strategy and, critically, to research into autism. Wales is the only nation with a national autism research centre, and it is based in Cardiff.

All 22 Welsh local authorities have an autism spectrum disorder local lead, and some have specific leads for children as well as adults. A national co-ordinator sits in the Welsh Local Government Association, and a national ASD practice website gives examples and shares practice throughout Wales. In my part of Wales, services and information are provided in both English and Welsh. As part of that process, each local authority has a local stakeholder group, and we should not understate the significance of that. This is about service delivery, people’s experiences and parents talking about their children. As the hon. Member for South Swindon said at the start of this debate, this is not about ticking boxes. Meetings and engagement with stakeholders are important. Every one of those authorities has had a local action plan in place since 2009. They are being reviewed and renewed depending on local need.

I hesitate to quote myself by saying that Wales is streets ahead, but I say that in the spirit of generosity to which I alluded at the beginning of my speech. The challenge is as great in Wales as it is in England, but we have the frameworks and structures in place to assist.

[Dr McCrea]

Does the hon. Gentleman take the point made by the hon. Member for Hornchurch and Upminster (Angela Watkinson) on the necessity of taking respite into consideration as part of an overall package of care?

[Mr Williams]

The hon. Gentleman is absolutely right. The hon. Member for Strangford mentioned the people he has met in his surgeries, and, as I have said, I have attended stakeholder meetings in Ceredigion. We have both heard from parents about the need for respite provision, so that they can recoup their energy and strength to be the parents they want to be.

I have two concerns about the UK situation. I am pleased that my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), the former Secretary of State for Wales, and the hon. Member for Hayes and Harlington (John McDonnell), have referred to Atos. That is an emerging situation. I should like to emphasise the difficulties encountered by many claimants with autism when dealing with the Department for Work and Pensions and other Departments. There are concerns that work capability assessments, which determine eligibility for employment and support allowance, fail at their core to recognise the difficulties that people with autism face when looking for work and accessing benefits.

Communication difficulties can make face-to-face assessments very hard. People with autism can misunderstand questions and fail to pick up on inference and assumption—they might answer questions only in their most literal sense. Furthermore, interaction is a key problem with autism, so the condition does not lend itself well to a call centre culture. One constituent went without the benefits to which he was entitled for a long time because he simply could not face direct, blunt questions on the telephone without support. I was pleased that the initial work undertaken by Autism Cymru, which is based in Aberystwyth in my constituency, included going independently to Jobcentre Plus in the town to offer support and advice to the DWP staff who give advice to address some of the problems—I appreciate the complexity of doing so.

I commend Autism Cymru for its work with police forces in Wales. Four or five years ago, it developed the ASD emergency card scheme. As we have heard, many individuals with autism have become involved in the criminal justice system as a consequence of their vulnerability or their social and communication difficulties. The idea, which was pioneered in north Wales and Dyfed-Powys and rolled out across Wales, is that somebody with autism produces a card when they come into contact with the emergency services. The card not only informs the emergency service that the person functions on the autistic spectrum, but offers pointers on how communication with them can be advanced.

There are approximately 88,000 schoolchildren in England and 6,000 in Wales with autism. The majority are in mainstream schools. Therefore, every teacher—I used to be a teacher—should expect to teach a child who is on the autistic spectrum. They should also be ready to teach with, or have access to, the appropriate level of expertise. However, the National Autistic Society in Wales tells me that only 47% of parents were satisfied with the level of understanding of secondary school subject teachers. As we have heard, early diagnosis, assessment and intervention are critical. As a former primary schoolteacher—admittedly, it was some time ago now—I remain concerned, like the hon. Member for Stalybridge and Hyde, about the training available to class teachers.

I have not been involved in the all-party group on autism, but I very much endorse its call for a lead teacher in every school with specific responsibility for ensuring equality of access for children with autism. That goes beyond the requirements of a special educational needs co-ordinator. The demands on SENCOs are immense enough without the complexities and range of challenges faced by working with autistic children.

We need to give our teachers the support they need, and I am not convinced that we have done that. Anecdotally, I remember being summoned to the head teacher’s office to be told that a new girl would be joining my class and that she was autistic. I can in all honesty say that, having been a class teacher for three or four years, I had not experienced that in any other classroom. In my years of postgraduate training, I had never come across the term autistic. In fact, special needs education training in those times amounted to four or five hours in one afternoon. Teachers are often aware that they can be failing the children in their care. It is not necessarily their fault—the training needs to be available to support them.

If the debate is characterised by anything, it is the need to raise awareness: awareness not only in Government agencies and education, and—I am pleased to report, as did my friends in Northern Ireland—awareness of the progress in our countries as well. What I am sure we all agree on is that the lives of children and adults may only improve if society has a better understanding of the condition that, as we have heard, affects one in 100 children. Recent figures from the NHS Information Centre have confirmed a similar incidence in adults.

[Henry Smith (Crawley) (Con)]

Will the hon. Gentleman give way?

[Mr Williams]

I am coming to my last sentence, so very quickly.

[Henry Smith]

I am very grateful to the hon. Gentleman for giving way just before his last sentence. Does he agree that the private sector also has a role to play in expanding autism awareness? I was delighted to learn only today that my local cinema, Cineworld, is working with the Dimensions social care charity to ensure that autism friendly films will be shown at that cinema. We need to spread awareness across all sectors of our society.

[Mr Williams]

The hon. Gentleman illustrates how the issue transcends everything. We could compartmentalise the debate in terms of education or, as I have, in terms of benefit issues. However, it crosses every aspect of life and we need that recognition. The hon. Member for South Swindon has done us a great favour in securing the debate and I look forward to hearing from the Government. I encourage them to carry on with the steps they are embarking on.